Meet Shelley, a 48-year-old patient from the Gold Coast. Shelley says she first heard the term Lipoedema while listening to a podcast in 2022. Up until then, Shelley believed she was deformed, due to the shape of her legs and her hyper mobility. “No one in my circle knew of Lipoedema” Shelley says. “I’d never sought help for my legs because I thought there was nothing I could do.”
Shelley says her legs were always very sore to touch and bruised easily. She also experienced a feeling of her gravity being off and a heaviness in her legs. “Everything I thought was normal” she says, “I now know were Lipoedema.” Shelley recognises similar symptoms in her paternal grandmother, and since she began documenting her journey online, her cousin reached out to her, having experienced the same symptoms, and subsequently pursued a diagnosis.
Shelley says Lipoedema has made everything a little bit harder for her and feels she can no longer do things for as long as she would like to. However, she feels that ultimately for her, it was how she looked that held her back. “I felt that because I didn’t look like a dancer or a surfer, I shouldn’t be doing those activities. There is an expectation that you’ve got to fit in, and I never did” Shelley says “I never saw my body represented anywhere growing up. No matter how strong and resilient you are, that does take a toll.” Since completing some inner emotional work, Shelley says she now does “whatever I want to do – although I can’t do it for as long as I’d like to and there will be some recovery time required.”
After Shelley had her fourth child in 2010, she tried a treatment called Jet Therapy, however, she didn’t see much of a difference in her legs. Subsequently in 2011, Shelley went to Thailand for traditional liposuction on her thighs, which Shelley says removed some bulk, however, it didn’t resolve the other issues. In 2014 at the age of 40 Shelley had a hysterectomy, within months Shelley says she gained 20kgs with no change to her diet or activity levels. Shelley continued to eat well and exercise with limited changes to her physique.
During the covid pandemic, Shelley participated in a Food and Body challenge and retreat, where she learned about self-limiting beliefs. Shelley credits this time as where she learned gratitude for her body, as well as how to connect her mind and body. Prior to this, she felt her body didn’t look and work ‘the way it was supposed to.’ “I connect with my body more now and appreciate it” Shelley says. “I don’t have to love my body all the time, but I appreciate it and all that it’s done for me and continues to do.”
After researching online, Shelley decided to pursue a Lipoedema diagnosis and treatment pathway. Following a Group Zoom call with Dr Lekich, Shelley was subsequently diagnosed by Dr Kim Jackman in November 2022 as late stage 2 Lipoedema. Shelley described receiving a diagnosis as a relief and very validating. “I’m lucky because by the time I got a diagnosis, I had already done a lot of inner work, so to receive the diagnosis was an answer, another piece of the puzzle, unlike how for some women – it can be a bit oh no.” Shelley says. It was at this appointment that Shelley also discovered she had a hole in her heart, venous conditions and fibrous legs – all of which would require treatment prior to pursuing a surgical pathway. “I definitely am on the right path, for what I can do at this stage” Shelley says.
Shelly says she is a self-declared ‘all or nothing type girl’ so the biggest challenge of her conservative management journey so far has been learning to slow down and reduce stress. Shelley is undertaking daily dry brushing, self MLD, compression pumps morning and night, remaining as active as possible with strength training in the gym, utilising compression garments and learning about nutrition from nutritionist Kimmi Katte.
Shelley says “Now that I am aware of the lymphatic system and how it works, I am better able to support my body with Lipoedema. I am more loving and nurturing of my body and have chosen movement and nutrition that bring me joy. I am more loving and tolerant to myself.”
Shelley has noticed a significant reduction in pain in the past months after undertaking her conservative management measures. She’s also noticed the shape of her legs and arms has begun to change, and her daily walks impact her mental health positively. Shelley says her legs don’t feel as heavy on the days she uses compression garments
Shelley hopes to slow and ideally stop her Lipoedema progression through her conservative management efforts. Due to having a hole in her heart and venous conditions, she is not a surgical candidate at this point. “I haven’t completely ruled out surgery, but just because I have these issues doesn’t mean I have to sit around and do nothing.” Shelley says.
12 months into her conservative management journey, Shelley says the biggest challenge has been trying not to do everything at once. “You get bombarded with information, ‘you have to do this’, ‘you should be doing this’ and I just got so overwhelmed. Now, if I can nail one thing, once I’ve mastered that then I can add something else in.”
Shelley says that with consistent compression wear over 12 months, she has seen her legs go from hard to being able to see definition in her ankles and knees. “I’m noticing big changes aesthetically, I didn’t expect that wearing compression and regular MLD would move so much fluid, I thought I wouldn’t be able to change much without surgery.”
Shelley says Lipoedema awareness is important to her because if she had known about Lipoedema in her twenties, she could have saved herself a lot of pain, frustration and mental torment. “The average age of diagnosis is 48, and that’s the age I was when I was diagnosed. That’s a sad statistic. Young women need to be made aware of this and what they can do about it.”
Shelley wants other women with Lipoedema to be patient and “choose one thing at a time that they can manage.” Shelley says she shares her journey to remind other women with Lipoedema that it’s not their fault. “You can continue to live a vibrant and full life with Lipoedema, and knowledge of the condition is empowering for you, because there are things you can do about it.”